New Mastodon users, I post about #SickleCell from time to time. Ask me anything about lived experience

#OnThisDay Birth Anniversary of Blaise Pascal (1623) - French mathematician, physicist, inventor. He made important contributions to the study of fluids, and clarified the concepts of pressure and vacuum.

Today is World #SickleCell Day.

https://knowledgezone.co.in/news

His sickle cell disease brought agony. Gene therapy is bringing hope. https://wapo.st/3NwqU1I This is such a wonderful read.
I was cured of #Hemophilia B with a gene treatment in Feb 2020. Life after pain is amazing. So glad #sicklecell cure is coming. Gene therapy is about to change medicine. #medicine

His sickle cell disease brought agony. Gene therapy is bringing hope. https://www.washingtonpost.com/science/2023/04/28/sickle-cell-disease-treatment-gene-therapy/ The miracles of modern medicine…once the micro aggression departs… #sicklecell #modernmedicine #CRISPR 🙏❤️🕊

I make this guesstimate with confidence because studies have shown that COVID devastates the bodies of those of us with #SickleCell. I feel knocked down, but not out. When I have a fever, it's bad, but that hasn't been a super stubborn symptom like I expect it would be with Ms. Rona

Apple Watch could help predict pain among sickle cell disease sufferers, study finds

'A study of suffers of sickle cell disease admitted to the Duke University SCD Day Hospital has found that an Apple Watch can be used to help predict pain.'

#science #medicine #health #SickleCell #Apple #AppleWatch

https://www.imore.com/health-fitness/apple-watch/apple-watch-could-help-predict-pain-among-sickle-cell-disease-sufferers-study-finds

Gene therapy isn't my forte, and my friend who I'd usually ask is at a conference this week, so I won't disturb her. Can someone tell me if, based on the results of this paper, L-glutamine supplementation in #SickleCell is a good or bad thing? N is pretty low, but that's par for the course with certain #hematology studies.

The effects of glutamine supplementation on markers of apoptosis and autophagy in sickle cell disease peripheral blood mononuclear cells https://discovery.researcher.life/article/the-effects-of-glutamine-supplementation-on-markers-of-apoptosis-and-autophagy-in-sickle-cell-disease-peripheral-blood-mononuclear-cells/12732b6df978355b9118d8ea6558d73f

#health #genetherapy #BloodDisorders #Blood #medicine #science #pharma #supplements

#BlackMastodon
@blackmastodon@a.gup.pe
@BlackMastodon@chirp.social

This is a really important study. Glad I found it.

Sense of coherence or self-efficacy as predictors of health-related quality of life in sickle cell disease patients https://discovery.researcher.life/article/sense-of-coherence-or-self-efficacy-as-predictors-of-health-related-quality-of-life-in-sickle-cell-disease-patients/77b16280c2103ca3b537a4caef258f4f

This study can lead to deeper mental health analyses of #SickleCell patients that can promote more efficacious treatment. It is difficult to have a sense of control of one's life and capacity to advocate and work for oneself when one is in constant pain, and often tethered geographically by their ability to get to the hospital in case of emergency. Plus, many would want to keep going to their preferred providers, so that results in a lot of staying near home.

#health #science #medicine #BlackHealth #MentalHealth #SelfEfficacy #QualityOfLife #HRQoL #SickleCellAnemia #hematology #BloodDisorders #Blood

#BlackMastodon
@blackmastodon@a.gup.pe
@BlackMastodon@chirp.social

In today's #SickleCell news:

Association Between Vaso-Occlusive Crises and Opioid Prescriptions Among Patients with Sickle Cell Disease: A Retrospective Claims-Based Study https://discovery.researcher.life/article/association-between-vaso-occlusive-crises-and-opioid-prescriptions-among-patients-with-sickle-cell-disease-a-retrospective-claims-based-study/f01c84e1259d3426a5b6df5fc0b90580

The conclusion makes sense to me, because as we age, the body breaks down from the constant ischemic moments that accumulate over time.

#health #science #medicine #BlackHealth
#BloodDisorders #Blood #SickleCellAnemia

#BlackMastodon
@blackmastodon@a.gup.pe
@BlackMastodon@chirp.social

Last #SickleCell article for tonight.

Diet is super important, as usual.

Red Blood Cell Membrane Cholesterol May Be a Key Regulator of Sickle Cell Disease Microvascular Complications https://discovery.researcher.life/article/red-blood-cell-membrane-cholesterol-may-be-a-key-regulator-of-sickle-cell-disease-microvascular-complications/c6443f7b1b9a38408e01d66b77c1cc9e

#science #medicine #health #BloodDisorders #Blood #Heme #hematology #haematology

#BlackMastodon
@blackmastodon@a.gup.pe
@BlackMastodon@chirp.social

Phospholipid autoimmune problems were not on my #SickleCell Bingo card. At all.

Girl, what is happening? 😭

Well, this just threw me for a loop.

Predictors and clinical complications associated with antiphospholipid antibodies in sickle cell disease https://discovery.researcher.life/article/predictors-and-clinical-complications-associated-with-antiphospholipid-antibodies-in-sickle-cell-disease/fb1eb5a3f0f73a50befe8bf67cbcbce7

#SickleCell #BloodDisorders #AutoImmune #Heme #madness!
#science #medicine #health

#BlackMastodon
#CaribbeanMastodon
@blackmastodon@a.gup.pe
@BlackMastodon@chirp.social

Hopped on the #SickleCell hashtag.

Sickle cell disease should not be the butt of a joke. People suffer daily because of it. I suffer daily because of it. Tucker Carlson is a POS, but don't put me in that basket. Also, DL Hughley is no friend of the entire Black community. Stop spreading that man's nonsense.

A Novel Measure of #Pain Location in Adults with #SickleCell Disease https://discovery.researcher.life/article/a-novel-measure-of-pain-location-in-adults-with-sickle-cell-disease/aa81211c60693dc9b18df2516c25486c

#SickleCellPainCrisis #SickleCellDisease #SickleCellAnemia

#health #Blood #BloodDisorders #science #medicine

#BlackMastodon #BlackFedi
@blackmastodon@a.gup.pe
@BlackMastodon@chirp.social

Enuresis and #OveractiveBladder in #SickleCell patients: a narrative review of the literature https://discovery.researcher.life/article/enuresis-and-overactive-bladder-in-sickle-cell-patients-a-narrative-review-of-the-literature/eb44006a5df33c57a62757c809b5d5d0

#health #science #RareDiseases #BloodDisorders #Blood

#BlackMastodon #BlackFedi
@blackmastodon@a.gup.pe @BlackMastodon@chirp.social

I'm pretty sure I'm going for another #booster soon. Definitely before May. I have #SickleCell, and there is no guidance from regular CDC. I'm astonished.

Hi, all. I'm new to Mastodon. I'd be very interested in connecting with clinicians and researchers in the following areas, if anyone has suggestions. Many thanks!

Long COVID
Sickle cell disease
Chronic pain
Any interesting topics in General Internal Medicine

#LongCovid
#COVID19
#SickleCell
#chronicpain
#medicine
#Science

One would think that a heritable blood disorder would be a more popular topic of conversation.

Our bad!

I'm hoping #SciComm folks can help spread the word, but the fact that scientists keep finding out this info about #SickleCell means we're getting closer to a cure that doesn't have to be #bonemarrowtransplant. Especially because immunosuppressive drugs can be hard on the body, and from what I hear, don't taste / feel the best.

I am absolutely fascinated by the ongoing reinforced findings of the role of #NitricOxide depletion in the chemical cascades associated with #SickleCellPainCrisis. It's baffling that I'm not finding more conversation about this: people in Africa, the Middle East, and the Mediterranean are all affected by #SickleCell and it's close cousin, #Thalassemia.

We're here!

Since I have a bunch of new followers and need to wind down, running another #BlerdTime session.

Tonight, we're gonna read about #SickleCell. So far, I'm the only person in this section of the #fediverse that has tooted about #SickleCellAnemia. That has to change.

Let's read an abstract.

Amino acid signature during sickle cell pain crisis shows significant alterations related to nitric oxide and energy metabolism https://discovery.researcher.life/article/amino-acid-signature-during-sickle-cell-pain-crisis-shows-significant-alterations-related-to-nitric-oxide-and-energy-metabolism/e95b7d3c8c713b7e9486d51608671d28

R Discovery app https://bit.ly/2SZhxxJ